Ladies and Gentlemen, Now Presenting...Guilt

Guilt has officially moved in.  He gave me no warning, no downpayment, no security deposit.  He just showed up at my doorstep today and walked on in.

Maybe it's the beginning of the depression phase.

Elisabeth Kubler-Ross wrote a book back in the late '60s called On (Of?) Death and Dying.  She identified five stages of grief:  Denial, Anger, Bargaining, Depression and Acceptance. She doesn't mention guilt...but I wonder if it's part of that depression phase.

You might be asking what the heck do I have to feel guilty about?  Well, I guess plenty...because the list is long.

I feel guilty that my dad suffered for a long time (looking back in retrospect, he had been in pain for at least 3-4 months) and we had no idea.

I feel guilty that my mom was his sole caregiver until Hospice.  She told me things last week that she had to do for Dad over the last 10 months and I had NO idea.

And because of these two things...I feel guilty I didn't help out more...visited more...called more. 

I feel guilty that I didn't get school work done while I was home for two weeks and that my students' learning may have suffered because of my absence.

I feel guilty that my daughter missed a birthday slumber party and my son had to miss his vocal recital.

I feel guilty that my husband had to be both "Mom" and "Dad" for two weeks...and all the responsibilities that come with those roles.

Most of all, I feel guilty for having the guilt - because guilt turns into regrets.  My motto is to live with no regrets.  (And up until this point, my only regret was not attending my Senior Prom...oh, and breaking up with a high school boyfriend my junior year. (sorry, Matt!))

I am thankful I had a week home with Dad before he passed - but in order to be thankful for that time - I have guilt over items that did not get done at home and school.  So how is it that you can be thankful, have guilt and regrets over the same time frame?  How frustrating...

I wonder how long guilt signed the rental agreement for?  Hopefully, it was a month to month lease...and not a year commitment.

Grief is the Word...

Grief is an interesting thing.  It affects me in different ways at different times, so I am never prepared for it or my reaction.  I wonder how many more types of grief or the many reactions I may have...

Waves.  Sometimes grief hits me in waves - I literally can feel it roll over my body, just like being in the ocean when a wave of water comes over you, and I become very sad and scared - almost like being homesick when I was young.

Rollercoaster.  It's the only way to describe the ebb and flow of feelings that I get when this type of grief hits me.  I'm ecstatically happy and then my emotions drop so suddenly almost to a deep sadness or depression.  Typically, I will be very social or excitable with someone and then I will turn around and snap at the same person, then the emotions level out again.

Controlling.  The grief doesn't control me, but somehow I need to control things in order for the grief not to control me.  Here's an example:  When we got home Sunday, I went into a cleaning frenzy.  My husband kept telling me to sit down and rest, but I just couldn't.  I had to keep cleaning.  Finally, he came up to hug me and just held me.  He asked me to please sit down and stop it.  I responded that I clean because it's one thing I can control.  I haven't been able to control my many other circumstances lately.

Overwhelmed.  This type of grief hit me a lot during the visitation and funeral service.  It was always brought on by someone who came to the event that I was not expecting - and it was overwhelming.  And so much so, that I would break down and sob.  It may have been an old friend, or someone who traveled from the Des Moines area - like a best friend or someone from school or my church. 

The experiences are so new, so unexpected that for a brief moment, I think that I must be going crazy.  Then I realize that I'm not alone - I'm not the only one to experience grief; I'm not the only one who has lost a father...and then somehow in those thoughts...I am comforted.

Ashes to Ashes; Dust to Dust

From the Earth we were born...and to the Earth we shall return.

We buried my dad in the town where he was born, grew up and attended school.  And it's the town I lived in until I was two years old.  We drove by that corner house where I lived before the service and as we were doing that, I had a sudden recollection of a memory where I had walked to the corner and got scared and ran back to my dad.  He picked me up and lifted me to his shoulder.  I was safe from all harm that was beyond that corner.

We waited until the weekend, so we would have more time to make the trip there.  From where I live, it's a four hour drive.  It was a great plan...just what he wanted, to be back in the town he loved so much.  He was buried next to his grandmother and grandfather and in close proximity to his in-laws (my grandparents).

My dad was cremated.  His urn was darker oak with a country scene carved in the side.  A large oak tree along side a country road bordered by a fence (two wooden beams between two posts) leading to the sunset (or sunrise...depending on your perspective).  Mom was adamant that we would not put the urn directly into the ground, so we had an urn vault.

We spent a day figuring out what we should bury with Dad in that vault.  Here's the list for your enjoyment...

1.  My dad collected toy tractors.  We placed the toy replica of the first tractor that Dad ever drove (it was an Allis Chalmers...orange).
2.  My dad worked in auto parts for 51 years.  Most of those years for Ford Motor Company.  We placed a Ford can koozie.  And the newspaper article that featured him and his career.
3.  My dad loved Coca-Cola (classic).  We had a replica of a Coke can in the koozie.
4.  My dad loved music and he knew everything about music (artist, label, chart date, etc.) and would quote the stats relentlessly.  We placed the Billboard Top 1000 singles from 1955-1986 book.
5.  My dad loved Andre Rieu and his Johann Strauss Orchestra.  We saw them in concert three times...we met members of the orchestra.  We placed a picture of Andre and the song list from the last concert.
6.  My dad loved to play games and cards.  We placed a deck of cards (and just happened to be Andre Rieu too).
7.  My dad loved his family.  We placed a family picture from last Christmas.
8.  Finally...personal notes and pictures from the grandkids, mom and good friends.

The burial was lovely and filled with love from family and friends and it fit Dad to a tee.  What I didn't anticipate was my angst when we had to leave him behind.  I felt like that little girl again, letting go of my dad's hand and toddling out on my own, except he wasn't there to run back to and be lifted up on his shoulder.

The New Normal

I've been here too long...I'm getting antsy. 

I keep thinking that I can't wait to get back home and have things get back to normal.  And then I pause...

Because normal isn't normal anymore.  We have the New Normal.

I had to leave Mom's house today for awhile to travel to another visitation in New Hampton.  A church friend of mine passed away from cancer the same day Dad did (death comes in threes, people).  And when I got home, I looked at the chair in the living room that Dad sits in and I wondered for a millisecond where he was.  I chuckled and wondered to myself how long I'm going to do that?

Or what my reaction will be when Mom will walk in the door at my house in Waukee and I will look for Dad?

Or the first time I talk on the phone with Mom after I'm back home and will absent-mindedly say, "make sure you tell Dad 'hi' from us" like I always have done and then will feel bad that I made that slip up.

I wonder what card I will buy for him for Father's Day before I realize I can't send it?

Or the birthday gift that I will think that he absolutely has to have and then realize he's not there to receive it.

I wonder if I'll be able to listen to Christmas music anymore from my childhood that Dad likes or cry while we open presents because he's not there to meticulously open them - one piece of tape at a time.

The New Normal will suck for awhile...until it becomes...normal.

Gone From My Sight

I want to make a shameless plug for a great book that we were introduced to while my dad was in Hospice care.  It's more like a pamphlet (a quick read anyway...) and it walks you through the process of dying.  (It's listed below.)

And dying is a process...

In fact, when I was witnessing Dad's death, my intellectual side of my brain kicked in and I became facinated at what the human body does when it's dying.  Dying in itself is a miracle - just as the process of birth is a miracle.  I hope that you experience and witness dying some day...it changes you...I think...well, I guess you'll all see when I return to my life in Waukee. 

_{The Hospice Foundation of America: The Dying Process: A Guide for Caregivers
Barbara Karnes: Gone From My Sight: The Dying Experience}

Signs, Signs, Everywhere the Signs...

There have been signs all around me during this process of my dad's death.  I should know better to pay attention...and on some level, I think I was...but that denial thing kept me from understanding on a deeper level.

Some people must see it to believe it and others must believe it to see it.  I see myself in the latter category especially when it comes to my faith and when Jesus is trying to communicate with me.  I know that I was in denial about my dad's death when I first came home...and it wasn't until I was called home for his final 24 hours that I believed he was dying.

For instance, when I first came home that first Saturday (3/12), I went to afternoon Mass at St. Joe's.  I picked up a lenten meditation book on my way out and the lenten theme was "I Will Give You Rest".  Dad entered Hospice on Ash Wednesday.  He died on a Friday...granted, not Good Friday, but the parallels are there.

Today after the funeral service, I grabbed a coffee cup from the cupboard.  It happened to be one of those cups that had "Mark" on it and then a description of the meaning of his name.  He's had the cup for many years (at least 20) and I've used it many times before.  I read the side of the cup before pouring my coffee.  It said:  Mark, meaning "brave".  I'll admit, I never saw my dad as brave before, but I do now.  These last 10 months as he battled his 3rd bout of lymphoma (and this time in the brain), were some of the most taxing moments of his life.  He never complained and he never showed us how much he was hurting...although I think back on how much pain he must have been in.

I wonder and look forward to the signs I will encounter going forward.  I think about how close our loved ones are - and while we cannot see them, we will look for the signs and know that they are there.

The Proverbial Question...

Today, the proverbial question is... would you rather die suddenly (like a car accident, heart attack, etc.) or would you rather die lengthy (like an illness)?

Prior to experiencing my dad's illness and death, I would have found pros and cons for either side and would not have been able to give you an answer either way.  (By the way, I'm notorious for that...)

After experiencing my dad's illness and death, I've made up my mind.

And I choose lengthy.  And here's why...

Death is usually scary for many of us and we fear it.  As we grow older, we know that death is a part of life and regardless of our faith and spirituality, we know we will die and what comes after we cross from life to death...well, that's up to you and how you live your life.  (but that's another post...for another time.)

If you are taken suddenly...I agree that it is easier on the person who dies.  It's quick, you don't suffer, etc.  But for those left behind...death becomes the enemy, death is hated.  Death has taken our loved one and we most likely don't get to say good-bye.  And as humans, I don't believe we really like it when something is done TO us.  Well, at least I don't.

But if you are taken lengthy...it most definitely is hard and painful.  The person dying suffers, we suffer, everyone suffers.  But now Death becomes like a friend, it is welcomed, we pray for it, we hope for it...it is in dying that the person no longer suffers...and those left behind, we get to say our good-byes.  Death becomes something FOR us.

And yes, I said it.

Saying Goodbye

Death is a funny thing.  Or at least it creates funny situations.

We knew we were down to hours.  I told Dad good-bye this morning...Mom told him to go this afternoon.  It wasn't until my sister said good-bye about 4:00 that he started to let go.

I was enroute from the hospital pharmacy picking up meds for the weekend.  My sister called about 4:15 to ask where I was.  I was stuck in traffic on 1st Avenue in front of Lindale Mall.  She said to hurry, that he was going.  Not much I could do in rush hour traffic with construction.

She called again at 4:25 - I was on 7th Avenue turning on to 10th Street.  She said she was putting the phone to Dad's ear so I could talk to him.  I'm talking to him and telling him it was ok to go that he didn't need to wait for me.  I could hear my Mom and my sister in the background - they were telling him to hang on until I got home.  So, the poor guy is caught between all of us telling him what to do.

I got home at 4:30...and up to the bedroom where he was.  We were standing around him - holding his hands and telling him it was ok and that he needed to go.  We were telling him it was all going to be ok.  He'd take a shallow breath and then nothing.  We'd hold our own breath...then...he would take another.  This went on for what seemed like an eternity.  He was going to go on his own regardless of what we were telling him.  It was comical...and he was stubborn.

Finally...he took his last breath.  It was peace.

He is home.

Dignity Schmignity...

The thing that I was not prepared for was the loss of dignity.  I think even more than the "death thing" - I will grieve this loss for a long time.

You realistically look at the situation - and you think, "well, duh...of course he can't change himself, go to the bathroom by himself, bathe himself, etc."  But it doesn't hit you what this really MEANS until you experience it.

When you diaper and bathe and roll and feed and wipe phlegm from your parent and they have no capacity to help you.  Dad was literally "dead weight" (no pun intended) - he had lost all function in his arms and legs two weeks ago.  It just broke my heart to see him just lying there.  My empathy kicked in and I kept thinking how he must feel (or how I would feel if I traded places with him).  I felt embarrassed and angry.  And yet, Dad expresses no emotion.

I will never take my dignity for granted again.  And I worry for my kids who may have to do this for me someday.  And I think that Kevorkian was on the right track...(did I just really say THAT?!?!?)

Have you kissed a Hospice Nurse lately?

I am amazed by everyone who works with, for or along side of Hospice.  In fact, whoever thought up the concept of Hospice is GENIUS.

Especially the nurses.  This is a job I could NOT do.

They have to deal with people dying and their dysfunctional families (spouses, daughters, sons, sisters, brothers, parents, etc.).  They have to deal with denial, tears, anger, denial, more denial and even more denial.  (We're dealing with a bit of denial...)

They massage and clean and change and powder and lotion and wipe and clothe.

Oh, and the smell.

I mean really, when a person is dying they smell.  Ok, I said it.  I mean really, they get sponge baths, but the teeth aren't getting flossed or brushed and usually (ok, most likely) the patient has to be diapered.  Yes, you can go there.  I'll deal with the dignity issue in another post...

The nurses deal with it - every day with multiple patients.  They are CARING and gentle and treat the patient so kind and their caring is a labor of love.  And boy, are they efficient - no move or action is wasted.  Often they are dealing with patients who are in constant pain.

So thank you Melissa, Kim, Annette, Jodie and Tracy (and anyone else I may have forgotten that takes care of my Dad in this process).  You all have secured a place in Heaven.

My Catharsis

I had to start this blog for my peace of mind.  This is my first entry.  There will be lots of them.  Some will be happy, sad, angry, bitchy and all other emotions you can think of.

You see, my dad is dying.

Instead of taking my verbal diarrhea out on my husband, I'm going to take it out on this blog.  Sorry, if it pisses you off, then don't read it.

Did I really just say that?